The last word on “person first language”

I am writing this for one reason: far too many people tell me what to say, so instead of explaining to everyone, I’ll just give you this link. Please read.

The idea

The idea behind “person first language” is that you put the person first, for example: person with autism. This emphasizes the person and not the disorder. Fine. Or so I thought.

But then I heard from several (and by several, I mean a LOT) of “people with autism” who specifically told me that they prefer the term “autistic” because autism is very much a part of who they are and how they perceive the world. They accept it, they embrace it and they want to be known as such. Fine. Or so I thought.

Not every “autistic” feels that way. Some actually do prefer “person with autism” because they hate how much autism has made their life suck (their words, not mine, really). Fine?

For some education systems, the teachers are actually told to use “person first language” because that’s what some parents insist on and it’s best that the education system not aggravate the parents. Fine.

So which did you tell me to do?

Here’s the thing. If I have dozens, even hundreds of “autistics” tell me to call them “autistics” because it’s what they want and then I have dozens, even hundreds of parents tell me to use “person with autism” because it’s what they want…. who do I side with?

Nobody.

I don’t take sides. First of all, it’s just ridiculous anyway. Seriously, is this what we spend our time on? Is this really a reason to get mad at each other? Can something this childish really begin to divide a community?

Well, no. The truth is, there’s a third group of people. They’re the “I don’t care” group. I love this group.

For most “autistics”, which are “people with autism”… they don’t care. Actually, they’d prefer you call them by their name. They’re more likely to respond. Further more, person, people, person of humanitarian decent… you know, what ever. It really doesn’t much matter.

For most parents of “autistic” children, which are “children with autism”… they don’t care. Again, using their name is generally the best option. But those parents really don’t mind how you refer to their children so long as you do it politely, nicely and with respect. They are their children after all.

I fall into the “I don’t care” group myself but in a way, I do care. I mean, if someone tells me they prefer one or the other, I’ll do my best to use that one method with that one person. I respect their wishes. But if that person is in a group of people, all of whom have various wishes or don’t care…. well, be ready for a mixed bag of terminology.

Don’t tell me how to speak, I don’t tell you how to dress

Quite frankly, I find it rude to tell me how I am to refer to my own child. Who are you anyway?

When my son comes to that point, if he does, and he tells me he prefers one way or another… you can bet your life I’ll stick to that one term…. with him. I’ll still use another term with another person if it’s what that person prefers.

In the mean time, until he tells me, or others tell me which they prefer, I’ll use the term that best fits the sentence. Because “the journey of my autistic child” sounds far better than “the journey of my child of which has autism”. That can’t be right.

Anyway, if you’re reading this because you’ve told me what to say, please visit the closest Walmart, buy some overalls, cowboy boots, pink shirt with the ruffles and the biggest hat you can find and wear that. Because I feel it’s only fair that you do something for me too.

It’s not that I don’t value your wishes, it’s not that I don’t understand exactly where you’re coming from. I do. And if the entire world said in one unanimous voice that it should be one way… then I would abide by that.

But it’s not that simple. I don’t make one group of people mad for the sake of making another group happy. There’s far better things to focus on that can benefit all people than this.

Thanks for reading.

About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not.
I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.

19 Responses to The last word on “person first language”

I also find myself using different terms based on the people I’m speaking with. Although, I must admit, I do like a few of the terms used by John Elder Robison to help categorize humanity: Aspergian and Nypical. Although, I would guess there are many folks out there who would argue with these too.

In the end, I don’t think there is any one way to define or categorize a person. I simply don’t want to waste my energy on it. 🙂

Good grief! Put me in the I don’t care group as well. My son is a child with autism, or an autistic child, and they both mean the same thing in my opinion. Am I a Canadian, or a person from Canada? Am I a mother, or a person with children? Imagine if everyone insisted on describing themselves one way or the other like this… we’d need to wear signs just so people would know how to address us! Such a fuss over semantics is just silly.

Great post! I usually refer to myself as autistic, except when I refer to myself as a person on the spectrum, a person with autism, a Jewish person, Bob’s wife, Ash’s mom, and a million other things.

If I know that the person I’m talking with really dislikes the term “person with autism,” I won’t use it. And I will defer to how someone talks about his or her child, so long as the person is being respectful. But when I’m writing, variety is everything, so I play around with the terminology quite a bit.

Mu dd hates “autism” in any aspect, “because it RUINED my life”…she is 23 and did not show signs till she got sick at 5 after cockatail of shots, and diagnosis has been difficult because we are in a rural area, and she has never shown ALL her “ingredients” to very many people…she tries to be on her best behavior, or can become the “immovable
object….she hates the term…

I found your blog because of a phrase I googled, and then realized you were the Autcraft Dad. Awesome! My kids live and breathe Minecraft. Anyway, I come here out of a genuine desire to learn. So… I thought until this week that I was doing the right thing by using “person-first language”, but am now realizing that is not one-size-fits-all. It began when I had a boyfriend in college who used a wheelchair. He was NOT wheelchair-bound. The chair was not his main defining characteristic. When I later had a child who received an Autism diagnosis I applied the same logic, assuming that was the respectful thing to do. (As an aside, something else I just read made me realize that I had not been applying that same logic when I called myself an “Autism Mom”. Funny how I missed that.)
So what I am wondering is, does that “person-first language” thing mostly come from the surrounding support community, and not from Autistic people themselves? Or are they divided?
I try so hard to choose my words carefully, so it saddens me when I am judged or dismissed simply because someone made an assumption about what they THINK I mean or what they THINK my intentions are. I guess I just wish we would all give each other a bit of grace as we find our way. I appreciate this post for being honest, and found it and the other posts it linked to quite enlightening.

Person first language is mainly a product of the medical/education communities. Doctors, professors, authors, researchers, care givers and so forth all are taught to use person first language so as to respect the individual and to not focus on their disability. As you said with the wheelchair, it was a natural bi-product of many other disabilities. However, what they failed to recognize when it came to autism was that so many people would see autism as a part of who they are or even something to be proud of rather than ashamed of.

As for the autistic community, I wouldn’t exactly call them divided as most, in my experience, don’t really care a whole lot what terminology other people use. A decent size portion of the autistic community does prefer the term ‘autistic’ though and have even adopted the phrase ‘identity first language’ in response to the ‘person first language’ that others try to force on them. However, people have to recognize that there are in fact some people that have autism that wish they didn’t. Some of those people very much do insist that people use person first language. They would very much love to have a cure since they want nothing more to do with autism what so ever.

Is there any one way to be certain that you won’t offend someone next time you go to address an autistic/person with autism? I’m afraid not. But, as I said, luckily, most of us just don’t really care. We might prefer one or the other but make no presumptions about what we can or can’t dictate of others.

It does, thank you for responding. It’s just so shocking to me that the very carefully crafted language I had been using might have inadvertently sent a signal to some people (not all) that I see my son’s Autism as shameful or don’t accept him as he is. Nothing could be further from the truth.

The other wrinkle in this conversation are those with Asperger’s who don’t like to be called Autistic because they see it as two separate things. So complicated, this business of labels and such.

I strongly prefer autistic person to person with autism, and yet I’m a big fan of the Sesame Street and Autism initiative, which consistently uses person with autism. Why? Because what you’re saying matters more than how you say it.

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